SEVERELY AFFECTED ME (MYALGIC ENCEPHALOMYELITIS) ANALYSIS REPORT ON QUESTIONNAIRE (Word document) ISSUED JANUARY 2004 Analysis Report by 25% ME Group, 1st March 2004
Results of survey:
Graded exercise therapy: 95% found it unhelpful
Cognitive behavioural therapy: 93% found it unhelpful
SOME FACTS AND FIGURES ON CBT, GET AND OTHER APPROACHES Directly from the 'Horses' Mouths: written by Doris M Jones MSc.
In July 1998 the then Chief Medical Officer, Sir Kenneth Calman, announced the setting up of a Working Group on CFS/ME, to include patients, carers, patient group representatives as well as medical experts, including Psychiatrists. The aim was to find out what really worked in treating these conditions and based on findings, to then compile Guidelines on Diagnosis and Treatment for Clinicians and other Health Care Professionals.
Over 80 people took part in this 3 year exercise, including myself. Eventually details were available on 3074 patients, and the summarized results showed very clearly that:
1. The most helpful strategies were:
a) Pacing activity with rest (2300/2568 cases = 90%)
b) Bed rest (2165/2426 cases = 89%)
c) Dietary changes (1496/2226 cases = 67%)
2. The least effective strategy was: CBT
3. The most harmful strategy was: Graded exercise
Surely it is time that psychiatrists took some notice and actually listened to what patients tell them. I have yet to come across a patient who complains about any treatment which works, whether this is allopathic, psychological methods (like CBT) or exercise regimes (like Graded Exercises). If it works, no-one will complain; the problem is these approaches very often don’t, and this is the one and only reason why patients are so persistent in their demands for other options and are determined to get to the real causes of their ill health. One thing is certain: psychiatrists have made things worse for many, in more ways than one.
Comments from Greg Crowhurst of the 25% M.E. Group to the Gibson Enquiry; including comments from 25% members, December 2005
Includes comments from 25% members on CBT, GET and the effect of the ‘psychiatric’ approach to M.E.
"This will be revealed as one of the biggest medical scandals in history" declared a severe ME sufferer. This Report, based on an email survey of sixty- four severely ill, classical, Ramsay-defined ME/CFS sufferers, with a "multiplicity of symptoms" including, muscle phenomena, circulatory impairment and cerebral dysfunction (Ramsay 1988), was conducted at short notice in December 2005 especially for the Parliamentary Inquiry, by the 25% Severe ME Group.
‘When I was first ill (8 years ago) my condition started to improve a little and my GP suggested I get back to exercising. It wasn’t really graded exercise – he said I should "get on my bike and get my heart pumping again." I did this along with some aerobic exercise thinking this would get my fitness back. I then became severely affected and have been for the past 8 years.’
‘After I came home from the hospital where I received CBT/GET therapy, a physio came to see me once a week. The first one was absolutely appalling, and used to drag me up off the bed and hold me upright, even though I was too ill to cope with this, and my body was collapsing under me. It was a 'fight' really, with her believing that if I wasn't allowed to sit down, the muscles in my legs would improve, and I would gradually begin to weight-bear’
Crowhurst comments: Sufferers are far too ill to protest, and too ill to ever undergo the so called behavioural remedies being developed in their name, but will never successfully treat anyone with real ME, as one sufferer explains:
"I have been ill in different phases for 15 years. I have worked it out for myself that you can only "exercise" within very narrow limits. It is simply not the case that you can exercise your way out of this illness. If it were that simple most people with ME who were previously very fit and active, would have long since recovered."
Often the only choice for sufferers is to avoid the medical profession, because of its negative attitudes and inappropriate, negative treatment, as one sufferer describes:
I participated in Graded Exercise therapy via the ‘National M.E Centre’, Romford, Essex. This lead to a relapse, at home, and made me unable to sit upright for 1 year due to pressure in my head, and chest pain. I then relapsed and ended up in my local NHS Hospital in a cardiac care unit.
Another sufferer describes how, despite an "extensive psychiatric evaluation" which resulted in a report saying ‘she is severely physically disabled’, ‘has no mood or behavioural problems’ and ‘is coping remarkably well given very difficult circumstances’, she was still offered "CBT and counselling and my symptoms of severe nerve pain, nausea, difficulties with speaking, sight, swallowing and eating, seizure like brain activity, intermittent paralysis, contractures in hands and feet etc were left un-investigated and untreated."
This sufferer states how: "I could see the sense in graded exercise and how it could help someone to comeback from an illness and aid in their recovery but unfortunately with ME this treatment does not work and just sets you back".
"If you do not respond to Graded Activity, the Benefits Agency seem to think you are either malingering or depressed and benefits are refused. The Agency, and in particular their Medical Examiners, seem oblivious to the problems and symptoms of severe ME and all seem under the impression that everyone with ME recovers in under 5 years. If you are still ill after that it either isn’t ME or you are mentally or behaviourally ill in some way.’
Just how dangerous aerobic exercise can be for the severe ME sufferer is illustrated by this respondent’s tragic story
"I was an in-patient in a psychiatric ward of a London hospital. I was the only patient who did not have a mental health problem, and although my CBT therapist had had plenty of experience of working with M.E. patients, I was the first to be admitted as an in-patient. I only saw my therapist once a week, and the psychiatric nurses had no understanding of my illness at all. There was a huge amount of stress, and I was treated very badly by some of them. I received both CBT and GET, but the graded exercise seemed to be given priority. I worked with a physiotherapist, who also had no experience of M.E. I began to seriously deteriorate, and 4 months in, suffered a major relapse. I had a kind of undiagnosed 'stroke', collapsed, and became incapable of looking after myself.
When I went to the hospital I could walk 100 yd., feed, wash and dress myself. When I left I could not weight bear at all, had no leg muscles to speak of, and needed two people to transfer me on and off the toilet and in and out of bed. I had little use of my hands and was totally bed bound. I could not tolerate sitting upright against the pillows, conversation was beyond me, and I could barely manage to feed myself by picking up food in my hands -- cutlery was out of the question. Nine years later I have improved, but I'm still bed bound".
Another sufferer tells how: "I am not monitored by anyone. I only see my GP if I have an unrelated problem, eg. a chest infection or need an alteration to my existing drugs. I have not been seen by a consultant for 8 years. I have never been seen by anyone specialising in ME, apart from a psychiatrist whom I do not accept as an ME specialist as my illness is not a mental health or behaviour problem."
Conclusion
This report paints a desperate picture. Surely our respondent was right to call this a "medical scandal" of gross proportions.
Despite the real danger of Graded Exercise Therapy being harmful to the severely affected, 44% of respondents were still offered this intervention.
Every survey of sufferers (and this one is no exception) seriously calls into question the efficacy of GET and CBT: 96% and 95% respectively of respondents who tried it said that it had a negative impact upon their symptoms, yet as this report shows, this is often the only "treatment" on offer to sufferers and is the one being vigorously pursued by Government.
Significantly more than half of those offered CBT or GET refused the treatment; that is because, as the study has shown, people are very aware and are simply not willing to be made worse. However the bleak reality is that more than half of sufferers, each one on average experiencing more than 20 severe neurological, autonomic and endocrine symptoms, are just being left to get on with it, with no treatment whatsoever, some for decades.
This report has presented shocking evidence of abuse at the hands of the psychiatric lobby. Our members have reported being locked in secure psychiatric wards or AIDS units and their lack of response to "treatment" being taken as an indication of their misguided thinking.
It is time to acknowledge and address the main issues underlying the reasons for this abuse.
Click here to read the entire document; many more quotes from severe M.E. sufferers are given in the text, as well as some high quality medical information, this text is highly recommended
NOTE: An * denotes that a name has been changed by request for the protection of privacy.
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